Living with, and in spite of, metastatic breast cancer

Tattoos and Chemo Calls

Good news folks! My lumbar puncture came back negative for signs of leptomeningeal metastases. While it’s not a completely full-proof test for LM (my neuro-oncologist pegged it at about 80% accurate, some research indicates it’s more like 55%), it is the best tool they have right now. This result is a good thing; LM occurs when cancer spreads to one or more layers of the blood brain barrier and/or into the cerebral spinal fluid. It’s difficult to treat with a tough prognosis, so we are relieved to have it off the table right now.

More Chemo Changes

We’ve also made another chemo change, or change back, as it were. The oral Tykerb/Xeloda combination I’ve tried the past month has just been too much for my body to handle. I will spare you the gruesome details, but even with extra meds to handle the side effects, I wasn’t spending much time upright or feeling human. Plus taking 80+ pills a week turned out to be too much for my stomach to even humor me about. So tomorrow I will settle back into the chemo chair and go back to my Herceptin and Perjeta infusions. I’m looking forward to a jump in quality of life and weaning off some of these steroids and other side-effect management drugs.

The Bucket List: Sunshine and Sister Tattoos

On Saturday, Cas and I went and got matching ankle tattoos. It was my first tattoo (his….fifth I think?) and a very special item on my bucket list. We chose a sunshine motif as Cas has always been the sunshine that keeps me happy when skies are gray (sorry in advance for embarrassing you, kiddo). Thanks to Bryan at Lucky’s in Northampton, MA for doing a bang up job.

My sister, Marlo, just left yesterday after a week’s visit here to Connecticut. It was so wonderful to see her and reconnect. She lives in Texas so we don’t get to visit nearly enough. To commemorate the trip, we also got matching “Soul Sister” tattoos (because two bucket list tattoos are better than one!). Manny at Nautilus Tattoo here in CT did awesome work and we love them.

Before I leave the subject of tattoos, I have to shout out to Lynn Prowitt that commas are next on the agenda. And it doesn’t hurt much at all…I promise.

Grand Canyon and Family Fun

We are headed to Seattle later this month to see my niece, Katie, get married to her fiancé Freddie, which I’m sure will be a beautiful event. After a few days in Seattle to have a much needed catch-up with Ford family, we are headed down to Arizona to visit the Grand Canyon, another bucket list item. Keep us in your thoughts and prayers so we can make this trip go down successfully without an accompanying ER visit.

I am SO happy to hear that the lumbar puncture results did not show what was feared. And while I’m annoyed that you need this kind of treatment at all, I am glad to hear that you are going back to something that doesn’t make you feel like total and complete sh!t all the time. Post loads of pics from your adventures later in the month. Thinking about you, sending happy thoughts, positive vibes and good juju, always! xo

You are amazing. I love how you are getting your bucket list cut down. While you are down at the Grand Canyon, try to go to Zion. It’s my favorite National Park. It’s different from many because the canyons are white and you are in them looking up. Safe travels.
Flo

So happy to hear this news. Glad you’ll be getting some relief from the crappy medicine soon. LOVE the tattoos- so beautiful. Can’t wait to hear about your next adventures. You’re going to have a great time. I miss you! Love you lots, friend. Xo

So glad the news was good and that ypu are having fun with your bucket list! I think you need to add my recent bucket list item to your list – Goat yoga. Great fun, real baby goats, plenty of laughs. Enjoy the grand canyon and post some pictures! All my love,
Tina